Celiac Info

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Many people with celiac disease suffer from nutritional deficiencies. This is because the illness causes damage to the small intestine, which interferes with the absorption of nutrients from the food we eat.

Below are two graphics produced by the Gluten Intolerance Group in Auburn, WA. They contain some great information about which foods contain the nutrients most needed by those with celiac disease.

One of the first symptoms I had of celiac disease was anemia. I still have to take an iron supplement daily, since my body has trouble absorbing nutrients from food even though I follow a strict gluten-free diet.

Celiac disease causes damage to the small intestine that leads to malnutrition and non-absorption of vital nutrients. Iron is one of the main mineral deficiencies seen in people with celiac disease.

Not only does anemia make you feel really bad, it can also be life-threatening. It is very important for anyone with celiac disease to have their iron levels checked on a regular basis.

The symptoms of anemia include weakness, headaches, dizziness, breathing problems and pale skin. A complete blood count (CBC) test is necessary to diagnose anemia. If you have any of these symptoms, be sure to tell your doctor so you can get the test.

For people with celiac disease, staying on a gluten-free diet is important because it decreases the chances of malabsorption. It may be necessary to make other dietary changes such as increasing the amount of iron from the foods you eat.

Foods that are high in iron include red meat, especially organ meats like liver, egg yolk, oysters, dried fruits, legumes and dark green leafy vegetables like spinach. Iron supplements may be another option for some patients, but it is crucial to consult a doctor first. Iron absorption is increased markedly by eating foods containing vitamin C along with foods containing iron.

The new FDA gluten-free labeling rule goes into effect today!

According to this new rule, when a manufacturer puts “gluten-free” on packaging, the item must comply with this FDA definition of the term – less than 20 parts per million (ppm) of gluten.

Foods that are gluten-free do not have to be labeled “gluten-free”, but any food product conforming to the less than 20 parts per million standard may be labeled “gluten-free,” even if it’s naturally gluten-free (i.e., water or fresh produce).

1. What food products are covered by this rule?

Meat, poultry and unshelled eggs (and any other products regulated by the USDA)

Distilled spirits and wines that contain 7% or more alcohol by volume*

Malted beverages made with malted barley or hops*

* These alcoholic beverages are regulated by the Alcohol and Tobacco Tax and Trade Bureau (TTB). The FDA says it will work with the TTB to “harmonize” gluten-free labeling requirements between the two agencies.

2. What food products may be labeled gluten-free?

A food product regulated by the FDA may be labeled gluten-free if:

A. It does NOT contain wheat, rye, barley or their crossbred hybrids like triticale (a gluten-containing grain) OR

B. It contains a gluten-containing grain or an ingredient derived from a gluten-containing grain that has been processed to less than 20 parts per million (ppm) of gluten.

3. May food products that are naturally gluten-free be labeled “gluten-free”, like bottled water or tomatoes?

Yes.

4. May oats be labeled gluten-free?

Oats that contain less than 20 ppm of gluten may be labeled “gluten-free.” Oats do not need to be certified gluten-free.

5. Will there be a symbol to identify foods that meet the FDA definition of gluten-free?

No. The FDA has determined that consumers favor the label “gluten-free” to communicate that a food is free of gluten. Manufacturers are allowed to include a symbol as long as it is truthful and not misleading.

6. Are manufacturers required to test for gluten to label a product “gluten-free”?

No. Manufacturers are not required to test for the presence of gluten in ingredients or in the finished “gluten-free” labeled food product. However, they are responsible for ensuring that the food product meets all labeling requirements. Manufacturers will need to determine how they will ensure this.

7. How will the FDA enforce gluten-free labeling requirements after August 5, 2014?

The FDA may perform food label reviews, follow-up on consumer and industry complaints, and analyze food samples. Consumers and manufacturers may report a complaint to an FDA Consumer Complaint Coordinator in the state where the food was purchased.

8. Why did the FDA adopt < 20 ppm of gluten as the standard instead of zero ppm? Why does CDF support this?

The FDA adopted the standard based upon the recommendations of the scientific and medical communities, and because there are no analytical methods available that are scientifically validated to reliably detect gluten below 20 ppm. The CDF Medical Advisory Board supports the < 20 ppm of gluten standard for gluten-free labeling. According to Dr. Peter Green, director of the Celiac Disease Center at Columbia University, “The 20 ppm is a scientifically determined level of gluten that has been shown to be tolerated by those with celiac disease. It is in line with standards in other countries.”

9. Does this rule apply to foods served in restaurants?

The FDA suggests that restaurants and other retail food service establishments use the same definition for gluten-free. This is not a requirement.

10. What are the FDA and CDF doing about gluten-containing ingredients in medications?

The FDA’s Center for Drug Research and Evaluation (CDER) is reviewing the public comments it has received regarding options to limit gluten exposure from consumption of drug products.

Humans first started to cultivate grains in the Neolithic period (beginning about 9500 BCE) in the Fertile Crescent in Western Asia, and it is likely that celiac disease did not occur before this time. It wasn’t until the 20th century that the cause of celiac disease was identified.

In 250 A.D., Aretaeus of Cappadocia recorded a “malabsorptive syndrome with chronic diarrhoea.” When describing his patients he referred to them as “koiliakos,” which meant “suffering in the bowels.” The patient described in Aretaeus’ work had stomach pain and was atrophied, pale, feeble and incapable of work. The problem, Aretaeus believed, was a lack of heat in the stomach necessary to digest the food and a reduced ability to distribute the digestive products throughout the body, this incomplete digestion resulting in the diarrhea.

Francis Adams translated these observations from Greek to English for the Sydenham Society of England in 1856. Adams gave the name “celiacs” or “coeliacs” to those suffering from this illness based on his studies of Aretaeus’ writings.

In 1888, the pediatrician Samuel Gee presented clinical accounts of children and adults with celiac disease at the Great Ormond Street Hospital for Children in the United Kingdom. Gee stated, “to regulate the food is the main part of treatment. The allowance of farinaceous foods must be small, but if the patient can be cured at all, it must be by means of diet.” September 13th is designated National Celiac Disease Awareness Day in honor of Gee’s birthday.

Christian Archibald Herter, an American physician, wrote a book in 1908 on children with celiac disease, which he called “intestinal infantilism.” He noted their growth was retarded and that fat was better tolerated than carbohydrate. The eponym Gee-Herter disease was sometimes used to acknowledge both contributions.

Sidney V. Haas, an American pediatrician, reported positive effects of a diet of bananas in 1924. This diet remained in vogue until the actual cause of celiac disease was determined.

Dutch pediatrician, Willem Karel Dicke, MD, was recognized in 1952 for linking the ingestion of wheat proteins as the cause of celiac disease. Dicke noticed that while there was a shortage of bread during the Dutch famine of 1944 there was a significant drop in the death rate among children affected by CD – from greater than 35% to essentially zero. He also reported that once wheat was again available after the famine, the mortality rate soared to previous levels.

The link with the gluten component of wheat was made in 1952 by a team from Birmingham, England. Villous atrophy was described by British physician John W. Paulley in 1954 on samples taken at surgery. This paved the way for biopsy samples taken by endoscopy.

The cause of celiac disease was eventually discovered to be an autoimmune reaction to gliadin, a gluten protein found in wheat, plus Secalin in rye and Hordein in barley. The lining of the small bowel is flattened, which interferes with the absorption of nutrients.

This gliadin molecule, found in wheat, is one of the triggers for the immune system reaction that causes celiac disease.

Originally called non-tropical sprue, terminology changed as research confirmed the adult sprue was the same thing as celiac disease diagnosed in children. The term “celiac disease” is now most commonly used. Another term for the same condition includes “gluten sensitive enteropathy.” Dermatitis herpetiformis and gluten ataxia are generally considered specific manifestations of celiac disease.

I’m very grateful to all of those who worked so hard through the years to find this disease and determine the treatment!

Milo says….

I LOVE my toys. I like to get them ALL out and arrange them around the den JUST RIGHT. Then Maizy puts them all BACK in the toy place again. We play this fun game nearly EVERY day. I’m such a LUCKY dog!

It took me a little while after I was diagnosed with celiac disease to figure out what questions to ask at restaurants. I felt really self-conscious asking at first, but it got easier each time.

How do you explain to a restaurant that you’re gluten-free? Telling your server is an important first step, but it can also help to have a resource to make sure that the restaurant understands how to proceed once you make that gluten-free request.

The NFCA has a free tip sheet to help you dine out safely. The tip sheet walks you through a number of important questions that can help you determine if a restaurant is properly prepared to meet your gluten-free needs. This guide cannot guarantee a safe meal, but it can help you feel more confident and comfortable when speaking with the staff about their gluten-free options.

On the right hand side of the sheet, there is a slip you can sign, tear off and leave with the restaurant to recommend that they get gluten-free training.

Here are some of the tips from the sheet:

Tip 1: Call ahead

Questions to ask:

Do you have a gluten-free menu?

Can you tell me what gluten is?

What are your gluten-free menu options?

Have you completed a gluten-free training program, such as GREAT Kitchens?

Tip 2: Be detailed

Ask these questions once you are seated at the restaurant:

Do you use any spice blends or mixes?

Do you use four or soy sauce in the dressing/sauce/batter/base?

How do you top/garnish the dish (i.e. croutons, fried onions, crackers)?

Do you use a separate prep space for gluten-free food?

Do you use separate cookware and utensils for gluten-free food?

Do you clean the grill?

Do you use a dedicated fryer?

Tip 3: Be proactive

Look closely at your plate. Be sure to ask if yours is the gluten-free plate. If you are unsure that your meal is gluten-free at any point during your experience:

Ask to speak to the manager or chef.

Explain that you have celiac disease and will get sick from traces of gluten.

Relay the facts of your experience, including relevant details.

Ask the restaurant to become a GREAT Kitchen (use cutout on guide.)

It is possible to dine out safely if you have celiac disease. But it’s important for you to be proactive about learning everything you can about your gluten-free diet and making sure those preparing your food understand, as well.

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Hi! I’m Maizy

I have celiac disease and I MUST eat a gluten-free diet. I’m learning to cook with sorghum by trying one recipe a week for 52 weeks. Milo is my dog and he will be sharing his wisdom, as well. Learn more about us and our blog here.